From Insight to Action: A National Patient-Centered Framework for CHD Pregnancy Outcomes

Journal of the American Heart Association, Volume 15, Issue 6 , March 17, 2026. BackgroundAn increasing number of patients with congenital heart disease (CHD) are pursuing pregnancy with the potential for cardiovascular complications.

This study aimed to establish patient‐centered national research and care priorities to improve pregnancy‐related outcomes for individuals with CHD.MethodsThis mixed‐methods study used a modified Stakeholder Engagement in Question Development methodology to systematically identify patient‐centered priorities. Key activities included consortium engagement (phase 1), patient and provider questionnaires (phase 2), and an in‐person facilitated meeting to explore survey results and follow‐up virtual focus groups (phase 3).

Reflexive thematic analysis was used to synthesize short‐ and long‐term research priorities (phase 4).ResultsThree overarching goals emerged: (1) improving access to specialized CHD, cardio‐obstetrics, and mental health care; (2) improving quality and consistency in clinical care; and (3) increasing patient and community engagement. These goals were then expanded into 5 central themes: (1) communication within the health care setting; (2) community engagement; (3) ancillary clinical support; (4) integration of patient‐reported outcomes; and (5) implementation, education, and knowledge mobilization.